Many of you heard the news earlier this week ... Porter Kate Lary is home in the Lary house with all the Larys even Larry the dog!
There's only one word to describe how we feel - thankful. Thankful our daughter is alive and getting better each day. Thankful for our family and friends. Thankful for the incredible number of prayers that continue to be lifted up. And most of all, thankful to the Lord for hearing us.
Since coming home, we've seen the pediatrician, who was amazed to see how great she's doing after reading the hospital notes ... miracle baby is now a medically appropriate term ;-), and she's also given blood for more lab work to track her progress. We get more blood work done on Tuesday and start to see the list of doctors (neurologist, nephrologist, developmental ... the list is long) on a regular basis. We are praying that her results continue to come back improved so we get one step closer to getting her dialysis catheter removed. As some very wise moms who've walked this road reminded me, we're taking it one day at a time and that's fine by us!
There have definitely been moments over the last month where I've said why me, but as we discussed with some close friends recently, why not us? We know that God is at work and we're trying to embrace every chance to learn and love along the way. And speaking of loving, special pic attached.
Thanks for walking this road with us and continuing to pray for PK. - Sarah
[James' update below]
Porter Kate is home!! Praise God!! All of our prayers continued to be answered as yesterday morning her potassium level dropped 1.1 to 4.5 without any intervention other than the Divine kind. Additionally, her creatinine level dropped to .7, the lowest we have seen. Honestly, I didn't think we would go home yesterday because I thought they would want to watch her at least one day longer. I was dressed for work. The nephrologist looked at the numbers, looked at me and asked if I was ready to bring her home. Sarah was a few minutes behind me so I let him tell her instead of ruining the surprise. She was elated. All of the nurses asked what the doctors did differently and we told them, the doctors did nothing different but we believed it was our prayers and the prayers of our friends and family.
What a great day but it was a long day. We received word at 8:30AM that we would be going home, but we didn't get home until after 4PM. The nurse had to make sure we knew how to dose the medication, we had to meet with a nutritionist, and the neonatologist put the fear of God in us about her eating enough because of her decreased kidney function. But the day leaving the NICU, not much bothers you. Not even the alarm company calling me to let me know my alarm was going off (false alarm). Luke was so excited to get to help me carry PK out of the hospital. Tears filled my eyes to see my family together as we headed home.
The first night home was not bad. She has the eating thing down, so I guess that is the difference between bringing a four week home versus a four day old. But I am pretty sure the night nurses would party with her because she did not want to go to bed until closer to midnight. We have to give her at least four bottles a day fortifying the milk Sarah produces, which is fine because we also have to give her medicine three different times a day and it is easier to mix it in the bottle. So, we have to work out our schedule, all things parents who bring home a baby have to do. It is nice to once again do things a normal family has to do.
We are out of the NICU, but there is still a good deal of follow up. Over the next two weeks, we have 3 doctors appointments and have to check her blood levels 3 times. PK is also coming home with the dialysis tube coming out of her abdomen, which is not only a possible infection point, but a reminder that she has not healed enough to be sure it can be removed. Upon discharge we asked for a copy of the discharge summary, which basically has notable doctor's notes beginning the day she was born including the Presby neonatologists summary of her delivery. Shocking to see it written down from his point of view. I have said it before, but she is a miracle baby.
I will update you with any information we get regarding blood work, EEGs, and nephrology appointments. We have leaned so heavily on you for your prayers and could not have gotten this far without them.
1. Pray that her potassium level stays at normal level.
2. Pray that her kidneys continue to improve dropping the creatinine level
3. Pray that dialysis is not needed and the dialysis catheter can be removed.
4. Pray that the seizures were an isolated incident and do not return.
5. Pray that Porter has the strength and determination only God can give to keep improving.